Sunday, 30 October 2011

Not included in this video but Dr Horowitz started his presentation talking about his recent visit to China to discuss Babesia with the CDC in China - good to know China is taking not just Babesia but other tick borne illnesses seriously and not being fooled by the IDSA restrictive guidelines.

Critical Needs and Gaps in Understanding: Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report.

EditorsCommittee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science.SourceWashington (DC): National Academies Press (US); 2011.The National Academies Collection: Reports funded by National Institutes of Health.

ExcerptIt was obvious to participants at the workshop that a significant impasse has developed in the world of Lyme disease. There are conflicts within and among the science; policy; politics; medicine; and professional, public, and patient views pertaining to the subject, which have created significant misunderstandings, strong emotions, mistrust, and a game of blaming others who are not aligned with one’s views. Lines in the sand have been drawn, sides have been taken, and frustration prevails. The “walk in the woods” process of conflict resolution or a similar process seems necessary for creating a new environment of trust and a better environment for more constructive dialogue to help focus research needs and achieve better outcomes. Such a process does not imply a compromise of the science but rather is needed to shift to a more positive and productive environment to optimize critical research and promote new collaborations.

Go to the link here to read this excellent report laid out into easily accessible sections.______________________________________________________

WALK IN THE WOODS - this process is so long overdue and aptly named in more ways than one, I spent the weekend listening to the ILADS 2011 Toronto conference streamed live - so much research is available and has been from 20,30+ years, even written by the IDSA denialists themselves, showing Lyme Disease and other tick borne illnesses to be difficult to test for and capable of persistent infection despite several courses of antibiotics - why do our Health Departments choose to ignore such a body of evidence?

It makes no sense which ever way you consider this - the health burden costs in themselves would make economic sense in ensuring that people are early diagnosed and treated not to mention adequate treatment for those of us who develop a chronic Lyme Disease, that's without the most obvious need to improve the quality of life for so many patients who like me have an antibiotic responsive illness following a tick bite.

It was a walk in the woods next to my home where I was bitten by ticks that caused my Lyme Disease illness and there is a growing number of my neighbours also infected, here's hoping this process of 'Walk in the Woods' - helps to get our doctors really working hard together to reduce this growing burden of ill health.

The Fitness to Practise Panel will meet at St James’s Building, 79 Oxford Street, Manchester, M1 6FQ to consider a new case of impairment by reason of misconduct.

The Panel will inquire into the allegation that between 2003 and 2006, Dr Wright, a General Practitioner, ran a private practice specialising in the management of fatigue disorders. It is alleged that Dr Wright instructed the Bowen Research and Training Institute, Florida, to test samples of six patients’ blood despite the Institute not being licensed for clinical laboratory testing. It is also alleged that in respect of a number of patients Dr Wright made diagnoses which were based upon inadequate evidence and subsequently initiated treatment.

The above reflects the allegation as it stands at the start of the hearing. The allegation may be amended as the hearing proceeds and when findings of fact are made by the Panel. If you require up to date information regarding the allegation throughout the course of the hearing, please contact the GMC’s Press Office.

In accordance with Rule 41(2) of the General Medical Council (Fitness to Practise) Rules 2004, the Panel may decide to exclude the public from the proceedings or any part of the proceedings, where they consider that the circumstances of the case outweigh the public interest in holding the hearing in public.

This was my response I would have liked to say so much more infact I'd have liked to throw all my blog posts at the MEAssociation and the GMC:-

There has been a concerted effort by our HPA to take out any doctor that dares to diagnose or treat patients for Chronic Lyme Disease regardless of whether patients have benefited from that treatment.

D of H reply to me recently ‘The Department is well aware of certain medical practitioners in the UK whose diagnosis and inappropriate treatment for Lyme disease puts patients at risk.’ Seems to me decisions were made even before these doctors come before a GMC hearing.

I was one of the fortunate patients who was given a clinical diagnosis of Lyme Disease (not by AW) and treated on long term antibiotics in line with International Lyme and Associated Diseases Society. I have recovered from painful debilitating arthritis and muscle weakness which was initially diagnosed as Fibromyalgia and then ME/CFS and later Polymyalgia Rheumatica until a chance course of antibiotics led to significant improvements. I was retired early on the grounds of ill health from the Civil Service but now I have my health and my life, with no pain and no disability.

Our Health Authorities are disregarding the wealth of research that shows this illness like other Borrelia to be a relapsing remitting illness capable of evading our immune system and short courses of antibiotic treatment. Visit the ILADS website for more information and Lyme Disease Action Website for information related especially to us here in the UK.

Last year the Institute of Medicine held a workshop on Lyme Disease and other tick borne illnesses their findings ‘Significant Gaps Remain In Understanding of Lyme Disease.’

Dr S O’Connell presented at that workshop and her presentation is still available to watch and listen to on their website. Dr O’Connell says in her presentation ‘we all agree we need improved diagnostic tests for all the tick-borne diseases.’

Current NHS tests for Lyme Disease can, according to some research, miss 50% of cases, they are antibody tests and the makers of those test kits used by our NHS – Trinity Biotech says that a ‘Negative results (either first or second-tier) should not be used to exclude Lyme disease.’

Dr O’Connell reported our doctors specialising in treating patients with Lyme Disease to the GMC, she will be called as the ‘expert’ witness, she is very well aware of the controversy that shows this disease to be far more complex than HPA accept following the restrictive and discredited IDSA guidelines.

At the IDSA review hearing the final report threw out any research that was done in Europe for the reason that in Europe we have several different species of Borrelia than in the USA, because they presented differently and had different illness patterns – information can be found on LDA website. We need clinical guidelines that are appropriate for us here in the UK.

For further reading see ILADS website for presentations given to IDSA review hearing in particular Steven Phillips presentation of 25 studies on seronegativity and persistent infection on 18 occasions the authors of the IDSA contested guidelines were involved in those studies and yet chose to ignore them in their restricted guidelines.

The GMC are being mislead into thinking they just have a bunch of wayward doctors out to make a fast buck- in reality we will find one day that they are very courageous doctors realising that this is the biggest medical disgrace of all time and struggling against all odds to find ways to help their patients get better and get their lives back.

We don’t know all the answers and they will be the first to acknowledge that, but we do know that some of us do respond well to long term antibiotic treatment.

If those denying this disease in it’s Chronic form would put as much effort into looking at the thousands of research papers (over 19000) then science could move on and make a significant contribution in helping patients who have an antibiotic responsive illness following a tick bite.

I hope others will comment on the ME Associations website and tell it as it is for patients with chronic Lyme Disease. here

Monday, 17 October 2011

'Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNA—making the Iceman the earliest known human infected by the bug that causes Lyme disease.'

Hmm! somewhat more to this than IDSA with their restrictive Guidelines would have us believe.

Monday, 10 October 2011

I have been wanting to update on the situation re XMRV but have been busy reading what has been unfolding which is so complex, I decided Ken Friedman's podcast gave a good summary but with so much more of interest.

[lp:Great thanks to Jane Clout for the transcription and for sharing it & to Tom Kindlon for posting it to co-cure.org]

[TK: Jane Clout took the time to prepare this (partial/near complete?)transcript and posted it today on mecfsforums with permission torepost. @XMRV_GA yesterday found an alternative link that may work inall browsers for those who want to listen:http://www.radio4all.net/index.php/program/54805 . I can't listen atthe moment so can't comment on accuracy . Tom (@TomKindlon) ]----------------------------------------------------------

This recording doesn't play properly until 12:00, and even then thereare breaks in the recording until the second half. I'm transcribingthat section, because Ken has some important stuff to say there. Ijust wish I could hear it all.

Having played it right through and gone back to the start, it seems tobe playing ok now. Loading problems.

Disrespect welcomes Dr Ken Friedman.

04:00 Ken: "In the United States there was just a very recent - I'mgoing to use the term battle -with regard to the ICD because the USgovernment was going to place Chronic Fatigue Syndrome as a somatoformdisorder as opposed to maintaining it as a neurological disorder so agroup of organisations banded together and wrote a long, veryscientific argument as to why Chronic Fatigue Syndrome should not beconsidered a somatoform disorder but rather a neurological disorder,and went to essentially an appeal hearing in Baltimore, Maryland onSeptember 14th and presented their argument, their document, and whatwe were told is that based upon the strength of that document, and thescientific arguments, that in fact Chronic Fatigue Syndrome would beretained as a neurological disorder and not moved into a somatoformdisorder. So we are very pleased with that but we certainly want tomaintain that from this point going forward.

05:17 Interviewer: Asks question about difference between Neuro andSomo disorders... Ken explains. Talks about prejudice against peoplewho work in the field, the difficulty in getting disability insurancepayments, and doctors under investigation for treating biomedically,including Myhill, and one other whos name is not yet in the publicdomain and is not given here either.

10:00 Talks about his SOK presentation April 6th this year and theprejudice against researchers and patients and doctors. "Theunderlying thing (belief) is that if you don't have a test for it,then it doesn't exist" Goes on to talk about sectioned patients inEngland and forcibly removed children in the US

15.30 Music break

18:44 Interviewer: "Did the conference hold out hope for any ofthese situations in its attempts to change the view of CF and of newresearch?

Ken: I think there is - um - I think we all, both patients andresearchers and healthcare providers left the conference with a muchmore positive attitude, and I think that because we all left knowingthat it is still a puzzle and that we do not have all the answers orknow all the pieces of the puzzle but that we are divising a method ormethods of working with the pieces of the puzzle. For example, thereare now at least four different definitions of Chronic FatigueSyndrome, and we think we have a pretty good research definition ofChronic Fatigue Syndrome and a pretty good definition for diagnosingand treating Chronic Fatigue Syndrome.

Interviewer: Care to share any of those?

Ken: Well the research definition that seems to be used is somethingcalled the Fukuda case definition, Fukuda et al, which dates back to1994, and that definition has been used since that date forward. Itis much more restrictive a case definition than one would like to seeused on patients, but it helps to define a patient population that isrelatively suffering from similar symptoms and so therefore forresearch purposes you are apt to get results that are clearly defined

Interviewer: So it's a conservative definition

Ken: A conservative definition that may exclude some patients andtherefore is not workable in a clinical situation.

In the clinical situation, you want something that is more relaxed, ora more inclusive definition, and there are actually a couple ofthose. There's what's called the Canadian case definition, which wasdeveloped in 2003, 2004, and that seems to be very good at identifyingpatients and their key symptoms, and having them diagnosed as havingChronic Fatigue Syndrome and then there is a brand new one that hasbeen developed in 2011 that is called the International casedefinition, and that one is essentially too new for anyone to have anysense of how it will fare, as either a patient case definition or as aresearch case definition.

But what seems to have happened at this meeting is that there seems tobe agreement that we will collect data or get information from eachpatient that will permit us to diagnose patients using several ofthese case definitions, (interviewer: really?) so that the informationwill not be lost, and so that we will then in retrospect be able tosee which case definition works best, both in the clinical situationand in the research situation, and that's a much more intelligentapproach than trying to squeeze all patients into one case definition,and obviously excluding some patients from treatment because theydon't fit this particular case definition.

(i.e. suck it and see. This bit really worries me. jc)

One of the interesting papers that was presented at this meeting wasby a clinician, I believe he's at GW, near Washington DC, was sort ofa courageous thing, what he did was he took his Chronic FatigueSyndrome patients, and he treated them for Lyme disease, andapproximately a third of them improved, their physical conditionimproved when treated for Lyme disease. Its not sure exactly whatthat means. We're not sure whether that means that approximately onethird of the patients in his patient population had Lyme disease, andwere just missed with the Lyme disease diagnosis, but when they weretreated for Lyme disease actually improved, or whether the actual, ortheir particular kind of Chronic Fatigue Syndrome is susceptible tothe same sort of treatment with anti-biotics that are used in thetreatment of Lyme disease, so that there is at least potential overlapbetween Chronic Fatigue Syndrome and other illnesses, and this issomething that needs to be looked at much more carefully.

24:15 Interviewer: And you spoke of multiple causes too, or multiple origins?

Ken: Yes, I do believe that there are multiple origins, and Ibelieve that the majority of clinicians and researchers at thismeeting were coming to this point of view. Because there are a numberof infectious agents that have been found to be initiators of theillness cycle in patients. One of the names, former names of ChronicFatigue Syndrome was chronic Epstein Barr Virus, and now there is workto show that patients that get sick with other viruses also developChronic Fatigue Syndrome. HHV6 for example, and enterovirus. Ifpatients do not recover from these viral infections they can developChronic Fatigue Syndrome. So it would appear that Chronic FatigueSyndrome is essentially the body's response, or perhaps the body'simmunological response to an infection that isn't cleared from thebody, which might argue that the people in whom this occurs haveimmune systems that are unable to clear these infections and thereforeChronic Fatigue Syndrome represents an immune system abnormality ordefect because these patients lack the ability to clear theseinfections from their body.

Interviewer: And they have an immune system what? Inability?

Ken: Inability or defect to clear these infections from their bodyand so they persist.

Interviewer: Yes, I think immune abnormalities have long been found inChronic Fatigue patients haven't they?

Ken: Immune abnormalities have been found. The problem is that thereisn't one consistent finding. And perhaps the reason for that is thatthere are these sub-categories of Chronic Fatigue Syndrome patientsand that if we define the right subcategory of Chronic FatigueSyndrome patients then we may be able to find a clear, uniform,distinct pattern of immunological abnormalities in a subset - in thisparticular subset of Chronic Fatigue Syndrome patients.

Interviewer: So then the job becomes defining the subsets?

Ken: Absolutely. And researchers are beginning to turn theirattention to that, and some of the questionnaires that are beingdeveloped to screen Chronic Fatigue Syndrome patients are beginning toask questions that will assist us in being able to differentiate thesubgroups and perhaps the infective agents that are precipitatingChronic Fatigue Syndrome in these patients.

27:20 Interviewer: So this is a hypothetical, broad immune responseto neurological agents of possibly many origins with a common humanadaptation to it which involves fatigue and neurological abnormalitiesand consequences - am I correct? Is this what's hypothesized?

Ken: Well the agents are believed to be infective, and they don'tnecessarily have to be neurological, although some of them may be.There is another theory that's beginning to go around now, and that isthat if infectious agents are not cleared from the body they canestablish themselves in one or more of what's termed the body systems,for example the gastrointestinal tract or the central nervous systemor in the cardiovascular system so that we are now beginning to see atleast the suggestion that things like cardiovascular disease orhardening of the arteries or the deposition of plaque in the arteriesis not only caused by the deposition of cholesterol, but might also bethe reaction to some bacteriological agent that has been deposited inthe blood vessels and therefore the plaque is an attempt to cover upor seal off those kinds of infections. And so Chronic FatigueSyndrome in an analogous manner may be a reaction that is akin to thatkind of mechanism

29:15 Interviewer: Yes, there are so many effects, and now you aresaying there are so many agents

Ken: Well, the idea is to tease them out. I'm pretty exited by itbecause I think what we are beginning to see is a whole new areaopening up to us about how infection invades the body and theconsequences of it. And so that what we discover about chronic, whatI would call hidden infections in the body will be applicable to awhole variety of diseases and answer a lot of questions that have beenaround for a long time but have never been answered before. And thiswill give us a tool, a mechanism of possibly providing answers tothese questions.

30:00 Interviewer: What else came out of the conference that you took away?

Ken: What I took away from the conference is first of all thewillingness to work with multiple questions that lead to thepossibility of diagnosing patients by multiple case definitions. Ithink there is a renewed excitement in the involvement of the brain inChronic Fatigue Syndrome because there is more evidence of differentkinds. I think there is also a lot more work in the area of geneticsand Chronic Fatigue Syndrome. People are looking ate genes beingturned on, being turned off in what I call the subsets, or somesubsets of Chronic Fatigue Syndrome versus "normal subjects". Theyare being able to find differences, or particular genes being turnedon and turned off. And based upon that they are looking for proteins,or protein differences, or differences in concentrations of proteinsbetween patients and normal controls. And so we are beginning to seewhat the differences are between normal controls and patients withChronic Fatigue Syndrome. And this is all very exciting becauseeventually we will be able to understand the differences betweennormal healthy people and Chronic Fatigue Syndrome patients byunderstanding the difference in the molecules that they are producing.And once we do that, we should be able to alter, or change back, ornormalise the molecules that they are producing that are producingtheir symptoms.

32:15 Interviewer: Wow! And that sounds quite in line with currentresearch too, it doesn't sound far afield

Ken: No, it's not far afield, and what it means is that there isnew excitement, and that the field of Chronic Fatigue Syndrome iskeeping up with the more advanced technologies and people arebeginning to apply those technologies to the field of Chronic FatigueSyndrome. Not only are they beginning to apply it to the field, butthey are also obtaining results, significant results that willeventually lead to better treatments.

Dr Kenneth Freidman on the future for Chronic Fatigue Syndromeresearch and treatment - thoughts from the IAME conference.

music break until36:25 Interviewer: Where's the leading edge of the research and thetreatment right now:

Kenneth: I believe the leading edge of research and treatment will bein two area. One will be in the neurological, in the involvement ofthe brain, and the other will be in the genetics and the proteins, orwhat's called the proteanomics of Chronic Fatigue Syndrome, those tome at this point seem to be the two most promising areas. And again,those are the areas that are keeping up with the most sophisticated oftreating all diseases, and trying to make gains in all diseases

Interviewer: Which is why you said that it's keeping up - in otherwords, its in the mainstream of research to treat diseases

Kenneth: That's correct. At the meeting we had people, granted mostlyfrom the United States, some from Canada, some from Norway, Japan,Australia, New Zealand, there was one fellow there from France, I'mafraid I'm going to leave someone out and I may be chided for it butessentially the research is coming in from all over the world.There's a fellow there from Spain, who presented a lovely paper in asession there that I chaired, so I believe that it's all over theworld.

38:00 Interviewer: There's an initiative, the Chronic Fatigueinitiative, that's attracted prominent professionals that have beentreating Chronic Fatigue Syndrome some of them for as long as 20 - 25years, can you tell us anything about that?

Kenneth: Well the Chronic Fatigue Initiative is relatively new, and Idon't think that they are at the point where they are actuallyexpending grants. The board of the IACFS/ME did meet with the folksthat run the initiative, and what we were told is that they wish tostimulate Chronic Fatigue Syndrome research, and they are at the pointwhere they are gathering information to essentially determine thestatus of Chronic Fatigue Syndrome research, and what they will bedoing is formulating a series of questions which they believe willmost quickly and expeditiously provide initial research results thatwill stimulate other research that will provide treatment and get atthe cause of Chronic Fatigue Syndrome.

Once they have formulated those questions, they will put out a requestfor proposals to address those particular questions about ChronicFatigue Syndrome. It's going to be a very targeted program based uponwhat they feel will be the most productive research challenges thatneed to be addressed in order to quickly get to treatment andpotential cures of Chronic Fatigue Syndrome.

And I should add that there is another organisation that is coming outof the gate, if you'll permit me to use that term, and that is calledSimmeron Research which is headed up by a group of people who are of asimilar mind, namely to promote research into Chronic Fatigue Syndromethat will yield results in a short time-frame, and the director ofthis program is a well-known internist by the name of Dan Peterson.

Dan has been working with Chronic Fatigue Syndrome patients for Iguess somewhere between twenty-five and thirty years. (int: He's inNevada, isn't he?) Yes, yes, Incline Village. So he has been I guessthe resource that is responsible for the formation of Simmeron andagain, this is another venue for stimulating research.

And of course we also have the Whittemore Peterson Institute whereAnnette Whittemore, also with the assistance of Dan Peterson haveestablished a research institute, and they certainly have shaKennethup the field of Chronic Fatigue Syndrome and stimulated a lot ofresearch about Chronic Fatigue Syndrome with their initial finding ofXMRV in a large percentage of a defined patient population withChronic Fatigue Syndrome.

These are new players, I would call them, to the field of ChronicFatigue Syndrome that will bring an element of excitement, andhopefully will accelerate Chronic Fatigue Syndrome research, not onlyby virtue of their own investments into Chronic Fatigue Syndromeresearch, but also by stimulating the Federal Government to payattention and to also put in more funds to Chronic Fatigue Syndrome inorder to balance out these private research efforts.

You mentioned XMRV too, and I think that was dealt with ambivalentlyat the conference wasn't it - there was one rese...

Kenneth: Oh, I would not characterize it as ambivalence, I wouldsay that there are a number of findings that put the initial 2009Science paper into doubt. The Whittemore Peterson Institute and, Iwould characterize her as the lead researcher, Judy Mikovits, stillmaintain that there are many questions generated by their initialfinding that have not been addressed by the papers that have come outsubsequently, that tend to characterize their initial findings asbeing negative,

and that before the issue of XMRV is fully understood, that much moreresearch has to be done, that the WPI is continuing to do research onXMRV, and so are many other laboratories, in an attempt to understandwhat is the relationship of XMRV to Chronic Fatigue Syndrome, and now,if the results presented at this particular conference are to bebelieved, the relationship of XMRV to a lot of cells in culture, andpossibly even to a lot of vaccines that are currently being usedthroughout the United States and throughout the world.

The situation is far from resolved. It begs to be resolved. Andhopefully it will be resolved.

44:30 Interviewer: So what I describe as ambivalence, is described bypeople like Judy Mikovits as a need to resolve unresolved implicationsthat the research has uncovered. (Kenneth: Correct.)So ambivalencewould not describe the researchers attitude at all.

Kenneth: No, I don't think there is ambivalence. It depends upon howyou wish to view Judy's data. If you look at it one way, it pertainsto Chronic Fatigue Syndrome, if you look at it another way it hasconsequences throughout the world and throughout laboratories who dotissue cultures throughout the world.

And there was one report there that XMRV is a contaminant that hascontaminated commercial products that are used in tissue culture. Andif that's the case, if that proves to be the case, then theimplication is of tremendous impact and of tremendous consequence totissue culture and all the research that is done using tissue culture,and if that is the case then Judy Mikovits needs to be applauded forwhat she has done in terms of uncovering this contamination, which isfar beyond anyone's initial expectation.

45:50 Interviewer: OK, so the relationship of XMRV to chronicfatigue is still unestablished

Kenneth: The relationship to Chronic Fatigue Syndrome is stillunestablished, and the initial - I would go as far as to say theinitial hypothesis has been called into question, but it remainsunresolved

Interviewer: What would you like to summarise your experience at theconference with before we close?

Kenneth: I think it was a great conference. I think that the worldis paying more attention to Chronic Fatigue Syndrome. I think thatChronic Fatigue Syndrome as demonstrated at this conference is thereis a huge amount of very promising data. There was a summary of theconference provided by Tony Komaroff, which is a name for people thathave been following Chronic Fatigue Syndrome research will be familiarwith.

He's a well respected Chronic Fatigue Syndrome researcher andcommentator, and he provided the overall summary, and at the end of ithe was asked "Which of these projects do you think deserves the mostattention" and his statement in response was that they all do. Theyare all exceedingly promising results and I agree with that.

The only thing I would add is that these are all exceedingly promisingresults done on relatively few patients with relatively orcomparatively relative small budgets and that there needs to be aninfusion of much more money into these studies, now that their promisehas been shown. I think that as we have now all learned, based on thejumping in of these few new benefactors to Chronic Fatigue Syndrome isthat we cannot rely solely on federal governments to support ChronicFatigue Syndrome.

That we need benefactors but benefactors are few and far between, andso I believe that the patient population, or patient populationsthroughout the world really do need to get more involved and supportthese kinds of research. And now with the advent of what is termedsocial media, people are getting on social media and saying "tomorrowis my xx birthday, and instead of sending me gifts because I am apatient, send money to this or that research institute or send moneyto this organisation to fund clinical care services.

And that I think is the only way that we will be able to achieve themagnitude of funding that we will need to be able to make ChronicFatigue Syndrome understood in terms of pathophysiology, to make ittreatable, with definitive treatments in a time frame that willbenefit the patients who have it now

49:25 Interviewer: I appreciate that point of view, it's quitecompelling. Perhaps, only perhaps because I'm not personallyacquainted, I understand the attitude with our federal government isthat we are not going to be able to meet our need for skilled workersin the near future by immigration alone, that we need to expand thenumber of people who work past retirement, and that in that light theymight be willing to look at something like chronic fatigue as limitinga great number of the population who could contribute to the workforceand the tax base in the future

Kenneth: Well it would be wonderful if any federal government wouldbe willing to put more money into Chronic Fatigue Syndrome. I thinkthat in most countries it's the patients who have to advocate forgreater federal funding. Not only do we need to keep olderresearchers working in Chronic Fatigue Syndrome but we need to somehowstimulate new researchers into the field of Chronic Fatigue Syndromewhich raises the whole issue of how do you do that?

Unfortunately Chronic Fatigue Syndrome because it is an underfundedarea of research, most young researchers when looking for a career inresearch, are not going to go there, they are going to go to thebetter funded areas because that is where they see that they can earna living. I think that we need to address the concern that ChronicFatigue Syndrome is a viable area of research by demonstrating thatthere is funding for it and consistent funding for it. In the UnitedStates several years ago we had five centers of excellence, and thenprecipitously the government said "We're not doing this any more".

51:22 Interviewer: And they were centers for research, forpromoting research?

Kenneth These were centers for research, for research and clinicalcare, spread throughout the United States, and the federal government,the National Institute of Health who funded it, decided they were notgoing to do it anymore, and so the centers closed. The people who didthe research in the centers, who were senior researchers, juniorresearchers laboratory research associates and technicians, were thenwithout funds, were without salary, so what were they to do? Theywere forced to go into other areas, and I suspect that if one ever didthis study they were loath to coming back

Interviewer: Well I understand we established a new center in BC inBritish Colombia in Canada for chronic fatigue, but I don't know..

Kenneth: Yes, and when it was done, I clipped the announcement of itthat I received, and I sent it to the Center for Disease Control and Isaid "If British Colombia can do this, why can't we?" (int: yesexactly, exactly) so I applaud the province of British Colombia, andI hope that other provinces can do the same. And I hope that theCanadian experience will embarrass governments in other countries todo the same

Interviewer: I hope you're right! I appreciate all the time you'vespent with me, it's been a very thorough interview.

Kenneth: Well I hope that I have been able to both illuminate, andalso to provide hope and to provide inspiration and to provokeenthusiasm of the Chronic Fatigue Syndrome community that you serve,in Chronic Fatigue Syndrome research and patient care, and to pleasenot give up on us - the educators, the researchers, the cliniciansbecause we really are trying our best to meet the needs and advancethe field of Chronic Fatigue Syndrome.

Sunday, 2 October 2011

Below is just one section regarding testing of Lyme Disease, from this excellent article.

Testing for Lyme disease

As we enter a new decade, clinical testing for Lyme disease remains abysmal.110–115 The two-tier algorithm recommended by the Centers for Disease Control and Prevention utilizes a screening enzyme-linked immunosorbent assay (ELISA) or immunofluorescence assay followed by a confirmatory Western blot. Although this approach has a high test specificity, the sensitivity of the two-tier approach in Lyme disease patients tested at least 4 to 6 weeks after infection is only 44% to 56%, which is inadequate for a clinical diagnostic test and, by comparison, far below the 99.5% sensitivity of diagnostic HIV testing.110,114,115 Furthermore, the misconception that two-tier testing is highly sensitive for Lyme disease patients with persistent arthritic or neurologic symptoms derives from a study that selected patients based on positive Lyme testing and then showed high levels of two-tier test positivity.115 This circular reasoning is a systematic problem with the evaluation of Lyme testing.

There are a number of reasons for the inaccuracy of Lyme testing, including use of less antigenic laboratory spirochetal strains in the commercial test kits, elimination of important spirochetal target proteins from those kits, and lack of standardization of the commercial Lyme assays.111–113 Gender bias may also be a factor: while chronic Lyme disease is reportedly more common in women, the two-tier test system yields positive results more often in men.116 Although a newer ELISA targeting the conserved VlsE or C6 peptide of B. burgdorferi has been developed, this test system does not appear to be more sensitive than the two-tier approach.117,118While molecular testing has been useful for diagnostic confirmation and treatment monitoring in other illnesses, molecular testing for B. burgdorferi has been unreliable, and newer molecular techniques targeting tick-borne agents remain unproven and expensive.119,120 Assays for more accessible surrogate markers of Lyme disease have yet to be accepted by the general medical community.121–125 Thus testing for Lyme disease remains problematic.

A newer approach to Lyme testing involves the use of proteomics.126,127 Based on the known genetic make-up of the spirochete, numerous proteins can be generated in vitro and tested for antigenicity using Lyme patient sera. In this manner, novel target proteins can be identified, and conceivably new test systems based on these proteins can be developed without even knowing the function or location of the antigens within the spirochete.126 Work on these proteomic-based test systems is already in progress, but extensive clinical validation will be required to bring those tests to market. Nevertheless the proteomic approach to Lyme testing holds great promise for more accurate serological diagnosis, and development of proteomic testing for tick-borne diseases provides a useful diagnostic model for other chronic and elusive infections. Beyond proteomics, novel test systems that exploit electromagnetic signals generated by bacterial DNA sequences may also prove to be effective in the diagnosis of chronic Lyme disease.128,129

Lord Astor of Hever (Con) My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly ...

Disclaimer

Nothing I say can be taken as medical advice you must do your own research and discuss with your doctors.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.